In preparation for OMF's 10th anniversary this year, we reached out broadly to the OM community to assess our track record. From the East Coast to the West, from Jefferson University (site of our next EANA Patient Retreat) to UCSF, common themes emerged. At the top of everyone's list was a critical question: how can everyone in this small OM community join forces to See A Cure?

In the years since its founding in 2003 by an eye surgeon turned OM patient, OMF has been dedicated to answering this question. So we looked outward, to the community we primarily serve - the OM patients, families and caregivers who entrust us with their legacies - as well as the many partners who work with us to address the most pressing challenges of this horrific, orphan disease. We also looked inward to develop a Strategic Plan that builds on the wonderful tools and services created for our patient population, including the Travel Assistance Grant (TAG) program and the Patient Forum which were firsts for the OM community.

Over the next 18 months, OMF will be ramping up its patient and medical initiatives even further, including rolling out a prosthetics program for patients and a full Junior Investigator Award (JIA) grant funding program to support the most promising OM researchers. Most importantly, we are striving to work collaboratively with other community members and OM groups.

Melanoma Know More and OMF jointly awarded a $12,500 research grant to a leading researcher at The Ohio State University for his pioneering work in studying herbal medicine and the treatment of uveal melanoma. The grant recipient, Dr. Abdel-Rahman, is a researcher and assistant professor at the Havener Eye Institute, Department of Ophthalmology and Visual Science at The Ohio State University.

Dr. Richard Carvajal of Memorial Sloan-Kettering Cancer Center presented findings on the first systemic therapy to have marked impact on advanced uveal melanoma. The treatment is selumetinib, a MEK inhibitor from AstraZeneca, which is linked to the GNAQ and GNA11 alterations seen in 9 out of 10 OM patients. In the randomized study, the selumetinib arm more than doubled progression-free survival in patients; 15% of patients in this Phase II study saw major tumor reduction.

Dr. Bill Harbour, recipient of OMF's 2011 Research Award, said, "In my opinion, this is the most important clinical advance in uveal melanoma in a long time." And Dr. Gary Schwartz, one of the doctors leading the study, says the results represent "the first real victory" in this rare form of eye cancer.

MEK inhibition shows great promise for the treatment of OM and OMF is dedicated to funding future trials and Junior Investigator Grants focused on this. Tremetinib (Mekinist� from GlaxoSmithKline) is the one MEK inhibitor that has been approved by the FDA (just recently, in fact, along with dabrafenib (Tafinlar�) for advanced, metastatic melanoma patients with activating mutations of BRAF) but there is very little data surrounding its efficacy with OM.

In 2003, when my friend and ocular melanoma patient Robert Allen, MD founded the Ocular Melanoma Foundation (OMF), his vision was to accelerate scientific research and awareness of ocular/uveal melanoma and to provide education and support to patients, their families and medical professionals. Now, on our 10th anniversary and as the newly appointed OMF Medical Director, I am proud to say that we continue to be highly successful in accomplishing this mission.

Whether you are a patient, family member, caregiver, referring physician, researcher or other interested party, OMF is here to serve you. As a physician with over 15 years of experience researching OM and treating OM patients, my role is to provide overall medical oversight to OMF. Key to my efforts will be a quarterly e-newsletter called Eye on a Cure and topical webinars that will feature areas of current interest to the OM community. I hope you will visit our website, newsletter, and informational brochures to explore and learn about the numerous clinical, academic, and research programs available to the OM community.

A recent study published in Nature Genetics, led by Melanoma Research Alliancefunded researcher J. William Harbour of University of Miami's Bascom Palmer Eye Institute, identified a mutated gene in ocular melanoma that appears to predict a good outcome. The mutation is in a gene called SF3B1, whose function in the disease is not yet clear but has also been found to be altered in other cancers. Researchers found that after five years, 20 percent of patients with the SF3B1 mutation developed metastases, compared to nearly 85 percent of patients without the mutation. A few years ago, Dr. Harbour identified another commonly mutated gene in ocular melanoma, BAP1, which is associated with poor prognosis. The SF2B1 mutation was mutually exclusive of BAP1 in the samples examined.

Said Harbour, "Ten years ago, virtually nothing was known about the genetics of ocular melanoma," he said. "Now we know four of the major drivers of the disease: GNAQ, GNA11, BAP1 and SF3B1." GNAQ or GNA11 mutations occur in about 85 percent of primary uveal melanomas and arise earlier than SF3B1 and BAP1 mutations.

Since its inception, the EANA concept has been devoted to OM patients and those caring for them. OMF welcomes input from any past or potential attendee and has established a Patient Steering Committee to inform both the retreat's goals and agenda. Melody Kling, well known in the OM community for her strong, supportive voice on the OM Facebook forums and for her creation of the A Cure In Sight patient support organization, will be chairing this committee.

We are in the final planning stages for November's meeting but if you have suggestions on agenda items or ideas on good speakers (we are looking for topical experts as well as patient and caregiver panelists), please drop us a note: EANA@ocularmelanoma.org

Spotlights on the OM Community

Bea Nguyen

Raising $5,000 to See A Cure

When my dad was diagnosed with OM, we had no idea how to react because we had no idea what Ocular Melanoma was. There was information on the internet, but I found myself constantly going back to the OMF website where I found the most useful information and felt a sense of community and support. I wanted to raise money for OMF because I believe in the work that it does. I want to play a part in giving other families who are dealing with this disease a place to find answers and to feel supported.

My goal was to raise $1,500 for OMF and I ended up raising almost $5,000. To be honest, I can't take any credit for the success of this fundraiser because I didn't have to do much; my dad did all the work. He was a writer whose work was well respected in the Vietnamese community. After seeing my initial Facebook post asking for support, my dad's friend posted the information on the South Vietnamese Marines message board and, through that, a Vietnamese newspaper ended up posting a story on the fundraiser. After the story was published, I saw donations come in from as far away as France and Australia-- all because of my dad, because of the life he lived, and the work he left behind. Through the efforts of just a few people who cared deeply about my dad, the small network I had originally reached out to turned into a community that spanned multiple countries. I will never forget this experience, not just because I managed to raise a good sum of money for OMF, but because it provided me with an outlet to deal with my grief and to celebrate my father.

I am an ordinary person to whom an extraordinary thing happened. I am a retired clinical psychologist, married to a retired English Professor for 51 years (and counting). We have three wonderful children, and now have 7 terrific grandchildren. My ordinary, pleasant life was blasted aside at the age of 45 when I was diagnosed with cancer in a body part I didn't even know I had, in my "choroid," a layer of tissue behind the retina. I was told it was serious and that I should have my eye taken out. I was not told that there was a 50% chance that it could metastasize (spread) to the rest of my body, in which case it would be terminal.

Ocular Melanoma, being an orphan disease, is infrequently seen and was little studied. At the time it made its first appearance in my eye the recommended treatment was to take the eye out, which I avoided because of my own research which unearthed an alternative treatment. The chance of cancer spread worked out against me when tumors were found in my liver, which yielded a Stage IV diagnosis and a 6 month prognosis. That was more than 10 years ago. Still today no cure or even recommended treatment exists.

Over the now 33 years since I was first diagnosed with eye cancer, I have educated myself in the research about Ocular Melanoma and have gone from clinical trial to clinical trial. I credit my, so far, 10 year survival against the predicted odds to that research, those trials, and the dedicated researchers who have given generously of their time to help me. Nothing has stopped the cancer, but it certainly has been slowed by my treatments.

Fortunately my husband and I were retired when this quest for extension of life started, so that we could pursue treatments all over the country. We are very grateful to OMF's TAG program as it has helped us pay for the extensive travel necessary to our pursuit of life and we are very grateful.

In collaboration with A Cure In Sight, a wonderful group started by Melody Kling, OMF Patient Consultant and Chair of our EANA Patient Steering Committee, we joined in on the efforts of Eye Patch Day, a catchy (And cheeky!) program begun overseas by OcuMelUK to raise awareness for OM.

On May 20th, OM Warriors around the globe donned eye patches to spark conversation and raise dollars for OM. We received tremendous positive feedback as patients, caregivers and other OMF supporters tweeted and Instagrammed using the hashtags #ocularmelanoma and #eyepatchday.

In response to much thoughtful feedback from the OM community, we started by streamlining our grant policies, practices and internal checks and balances to more quickly and effectively respond to the needs of researchers, clinicians and, most importantly, of patients and their families. This is a critical step at a critical time for the OM community.

Second, we have redoubled our focus on meeting patient's near-term needs for education (including up-to-date medical materials, lists of clinical trials, options for adjuvant therapy, FAQs for physician conversations, etc.), for emotional and community support, and for direct financial assistance (including help navigating the ever-confusing insurance landscape). These are the important 'here and now' needs.

On the education front, we are re-investing in our Patient Forum (with almost 2,000 active members), constantly updating our website, planning webinars for H2 2013 to augment our EANA retreat agenda (topics will include 'Navigating the Insurance Landscape for Cancer Treatment') and have created new brochures to be distributed to optometry and ophthalmology practices around the country to educate the doctors who are typically the first line of defense in the OM battle. Time and time again, we hear from the OM community - doctors and patients alike - that they want (1) more up to date information and (2) more collaboration and knowledge sharing within the small community and that is just where OMF is focusing.

For direct assistance, OMF is proud to now have two patient benefit programs:

Travel Assistance Grant (TAG) Program

In battling this rare and insidious eye cancer, OM patients face immense financial burdens. Beyond the direct treatment costs which insurance often does not cover, many are on surveillance regimens requiring long distance travel every six months for scans and follow-up. OMF has committed $15,000 for the Travel Assistance Grant (TAG) program to individuals and their immediate caregivers for travel within the United States to valid and documented treatment appointments.

To date, we have received 20 applications and funded over $3,600 for patient travel. We anticipate receiving 50 more applications over the course of 2013.

New in our 10th anniversary year, our Prosthetics Assistance Program (PAP) will provide financial assistance up to $2,500 to patients in need of eye and facial prosthetics.

On the research front, our near-term focus is on funding the most promising young researchers focused on ground-breaking OM research. This is under the umbrella of our JIA grant program.

Junior Investigator Awards (JIA)

For 2013 and 2014, OMF will focus its research efforts on making strategic, leveraged grants to junior investigators working in major labs with a focus on OM. Working in partnership with leaders in the cancer research field like the American Association of Cancer Researchers (AACR) and the Melanoma Research Association (MRA), we have committed a minimum of $25,000 per year over the next two years to fund Junior Investigator Awards (JIA).

The Next 10 Years: The Power of Working Together

We have embraced this Strategic Plan to guide our actions in our 10th anniversary year in 2013. But we cannot do it alone. Partnerships - with individuals, organizations, and sectors - will be instrumental to any success the OM community can individually or collectively achieve. Together, we can lead boldly by bridging differences, facilitating collaborations and opening doors for the greater good of the OM community. We can together leverage limited resources, disseminate knowledge and convene and coordinate others to focus on highest priorities for conquering this orphan disease.

And finally, as we said at the outset, OMF is determined to measure, learn from, and share the impact of our efforts in every sector in order to better serve the OM community. The stories in this Eye On A Cure E-newsletter and those heartbreaking and wonderful stories from our patients, grantees and community partners, animate our work and point to the power of working together to develop smart solutions that capitalize on today's technology and social networks. The passion, dedication and innovative ideas coming out of this close knit group improve the lives of all in the OM community.

Thank you for being a supporter of OMF and our mission. We look forward with vigor and optimism to a second decade filled with coordinated, patient-focused efforts and strong research strides in our quest to finally See A Cure.